anyone successfully claimed DLA for migraine

darkrev

MrsManda wrote: »

It's not the diagnosis which matters but how you are affected.
The symptoms you are describing and their frequency make it sound like you should get care if not mobility as well.
I have neurological symptoms (no diagnosis as of yet) which are not as severe as yours sound and receive LRC and LRC which I got without a fight.

When filling out the forms you need to put details of your symptoms and how they affect you day to day rather than focussing on diagnosis as this is largely irrelevant.
When did you last fill out the form/get the decision for DLA?
Did you get copies of the evidence they made their decision on?
Did you appeal?
Have your symptoms got worse since?

symptoms worse / Yes
I have described every thing I can, they even rejected my appeal originally before waiting for my evidence and then rejected it again having seen it a day later, i dont even think they read it. I think They are focusing in the migraine definition, as a way of not helping me, as for work.... i was about to qualify as a nurse and had only a couple of months to go. thanks for your thoughts. any more appreciated

Trialia

darkrev wrote: »

thanks for your thoughts, I am way past the triptan stage, i was taking them so frequently it increased my stroke risk by 60% . I am being put on experimental drugs , the first one is Sinemet which is normally used for Parkinson's disease. it is very toxic, we are now looking at severing the nerves and nerve blocks........scary

Ouch! Yeah, they're a fairly early stage for chronic migraines, but most doctors don't think to try naratriptan as it is - or was when I was prescribed it a couple of years ago - the most recently-finished of the lot and doesn't have a generic yet. I was lucky, in that one.

Good luck!

iluvmarmite

Although this is not the same as migraines I understand how difficult it is to get DLA when you have something they believe is maybe a mild or not debilitating illness to most people.

my Sister has meniers disease, which is a problem with the inner ear causing dizziness, most who suffer from it have attacks every now and then, but with her its constant, she cant walk properly as her balance is badly affected and she tends to walk to one side, and often falls over, she has knocked her teeth out falling, and has had black eyes and bruises all over her body, she iis partialy deaf in one ear, shakes constantly making it impossible to cook food as she cant hold a hot pan due to the shaking, its also a pain in the butt trying to get to the toilet in time because she shakes so much she cant get out the chair in time! so has to wear pads.

She applied for DLA and was refused because they looked up the illness and decided it wasnt an illness that was serious enough to require care or mobility help, she spoke to someone at DLA and they admitted they had never had a request for that illness so went on what they could find out via the internet, she appealed and the first thing they did was send a doctor round, he didnt even ask her to do a walking test as when he tried to shake her hand he could see she wouldnt be able to do that with out shaking, he did ask for a cup of tea, which her husband made, he asked her to pick the cup up and drink it she couldnt due to the shaking.

She went to the appeal hearing, I went with her, the panel stated they couldnt understand why she was refused in the first place and she was in a wheelchair and couldnt do anything with out shaking, or falling over, the appeal went in her favour and she was granted high rate care and high rate mobility indefinatly.

So it goes to show that although some believe that certain illnesses are nothing and will go away eventualy thats just not the case, I have never had a migraine, a bad headache is enough for me! but its something that you should fight for, maybe get a doctor round from the DLA to your house so he can see how bad you are.

Careful_with_that_Axe

OP, I have only ever had one migraine in my life (cause by a drug interaction), so I can't offer any help, but didn't want to just read and run. Anyone who suffers these, however frequent, has my utmost sympathy, and I do hope you can find some relief from this in the longer term.

confused76

hi darkrev...i'm in a similar situation as you...diagnosed with chronic migraine and restless leg syndrome and see a neurologist. i have the forms for DLA at home (i'm currently receiving ESA) but don't know where to start. on my bad days i am confined to bed and can't make any food or anything like that, but on a good day i can function far better.

i'm also on sinemet so i know how nasty the side effects are! nerve blocks didn't work for me but i've heard that it works really well for some people, as does botox

i hope you find a treatment that works soon, i understand how debilitating and destructive migraines can me pm me if you ever want a chat xx

MrsManda

confused76 wrote: »

hi darkrev...i'm in a similar situation as you...diagnosed with chronic migraine and restless leg syndrome and see a neurologist. i have the forms for DLA at home (i'm currently receiving ESA) but don't know where to start. on my bad days i am confined to bed and can't make any food or anything like that, but on a good day i can function far better.

I don't know if it'll help you but my health is highly variable so before I filled out my application I wrote a diary for 2 weeks to record how I felt and how often. This gave me a quick guide to how often I had good and bad days for when I was completing the form.

confused76

MrsManda wrote: »

I don't know if it'll help you but my health is highly variable so before I filled out my application I wrote a diary for 2 weeks to record how I felt and how often. This gave me a quick guide to how often I had good and bad days for when I was completing the form.

thanks MrsManda that's a good idea. I need to start a comprehensive diary anyway to try and pinpoint patterns...food, drink, weather, sleep, pollen count, stress etc. were you awarded DLA even though your condition fluctuates? x

darkrev

MrsManda wrote: »

I don't know if it'll help you but my health is highly variable so before I filled out my application I wrote a diary for 2 weeks to record how I felt and how often. This gave me a quick guide to how often I had good and bad days for when I was completing the form.

Thanks< Its really difficult to keep a diary for me , my neurologist has asked me just to jott a number for migraine strenght between 1-10 as I cant function to write a diary on the days I need I havent gone lower than an 8 more than twice this year so far. But thereis always hope

Savvy_Sue

Can someone else help with a diary?

MrsManda

Confused76:
Yes I was awarded DLA despite the flutuations. On my application I wrote in detail what I had difficulty doing and how often. I included extra information for each question on a separate sheet of paper so I could say that I experience X symptoms and thus have Y care needs Z times a week but I experience A symptoms with B care needs ~C times a week.
As I was still seeing the various specialists and my GP very often at the time my doctors knew the situation so backed up everything I said.

Darkrev:
your pain score should be fine as it's a diary to help you remember how often you experience problems and to what extent. You know what you can do on a 'good day' and what you cannot do on a 'bad' day so writing your pain score/writing down that you had a reasonable day and managed to go shopping or whatever means you have a guide when filling out the form.